Guest guest Posted September 19, 2001 Report Share Posted September 19, 2001 * Hi Steph, My son LJ has been on this diet for 17 1/2 months now and doing just great. I also eat only what LJ eats so as to not make him feel different. Even if I have company over they are all served GFCF also. LJ luckily eats everything so it's easy cooking and I can serve a wide variety. Dessert is always " Miss Robens chocolate cake mix " when there is company. I have gotten use to all his food - but there is no stopping me when he's at school to go get Chinese buffet or McD's!!!!!!!!!!!!! in New York (LJs mom) * On Tue, 18 Sep 2001 07:57:51 -0500 " Puckett " writes: I > have been following whatever diet he is on as it seems to make him > more diet compliant to know he isn't the only one having to do > without. It is a bummer though. Just wondering how this works in > terms of the household needs for most of you. > > Steph ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2009 Report Share Posted October 17, 2009 I really don't like to send emails about me, but you guys might be surprised at what has been going on for the last couple of months. You guys have encouraged me to leave Vanderbilt Hospital and search for someone that could at least listen to what's going on. First I was sent to a PCP, that's young and doesn't mind a challenge, and Lord knows I'm a challenge. lol I've been seeing her for about a year, and every complaint that I've listed to her has panned out asd something being wrong.. Not that I'm happy that anythings wrong I'm just happy that she isn't biased regarding my care and is willing to be open minded, to see if what I'm telling her can be explained or not. She first started trying to see if there is/was something with my ability to swallow.. and absolutely by a throat speciallist that I did have paralysis on the R side of my throat, and that my mouth dosen't create its on saliva, plus I had suffered from trigeminl neuroliga (sp) I have to take 2 tablets 3times aday of Pilocarpine to replace the saliva so I can even speak.. my mouth is so dry I can't clearly speak. This last week has really confirmed to me that I really need to get out of Vanderbilt as they was not working toward assisting me, they would say, Oh ms parker, you're alright.. just don't worry about it.. The begining of this last week they performed a bone marrow biopsy because my blood counts just continued to plumet to the bottom, I had had one a couple of years ago and it showed that I was iron deficient, so I took iron tablets three times a day. for a couple of years.. this time.. my iron was fine but there was something a little screwy in my bone marrow that was a tad bit strange. He told me but it was way over my head and he said the every famous words, "we'll just watch it" fine. I was then sent for a ct scan of my abdomen and pelvis, trying to find a source of bleeding, cancer, or any damage that the old sarc monster might have caused.. My pelvis was fine, but my liver is huge, he called off Hepatits C, and Cirrhosis but secondary to chronic illness (Sarcoidosis) both irreverosible.. but the biggy is that my spleen is twice the size of a normal spleen, but on the inside of the spleen is a lymph node that has formed into a Lymphosis (cancerous) cell.. I have 3 options #1 to go in a rupture the spleen and get the nodulle out. #2. Do nothing, just watch it and make sure that it doesn't rupture . The lymphoma itself is self contained inside the spleen.. and therefore can not spread. And it has always seemed to me that when someone is opened up and discovered they have cancer, that when the cancer feels the air, it spreads like crazy. So every 2 months I am to come back and have the test redone. and should I get into any kind of accident that my cause my spleen to rupture to find my way to the hospital.. He says that the spleens job in an adult is to filter our blood from infections.. and that I'd risk infections going directly to my organs should I not have a spleen, for the rest of my life.. I'm sorry this is long, but I'm so excited, not that anything is wrong but that someone took the time to figure all this crap out for me.. Sorry, I'm not around that much, but like all of you we are battling this crazy disease ourselves. So all of you that have told me to leave Vanderbilt well "I DID IT".. Hugs, NS Moderator Quote Link to comment Share on other sites More sharing options...
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